Living Strong with CFS

Dawn with "Effie" on winter ride.

For twenty years, I rode a blind roller coaster, not knowing where I was headed and what shape I would be in when I got there. From the time I was a teenager I was struck with disabling periods of illness that left me dizzy, weak, with migraines, painful glands, massive hair loss and literally hundreds of other symptoms.  The illness had been a mystery for so long that my family and I had begun jokingly calling it “Steve” in our “Over the Hedge” reference to anything that was unknown.  It was only last year that I was finally diagnosed and – although I still ride that roller coaster- the blind-fold has been removed.  After finding an amazing doctor that actually listened to me, after almost a year of every test you can imagine (treadmills, MRI’s, CT’s, more blood taken than a Blade movie…) I was finally diagnosed with Chronic Fatigue Syndrome.

There is not nearly enough room in this blog to explain just what this illness can do to your life. Sadly for me, the earlier you get a diagnosis the higher your likelihood of recovery. I think I missed that window a couple of decades ago but I refuse to live a life “half-lived”. If you think CFS is just about “being tired” as the asinine name suggests then please learn a little bit more about this illness by reading the award winning New Yorker article "A Hidden Illness" written by Laura Hillenbrand (yes, the author that wrote “Seabiscuit”, the one that became the movie, and the new book “Unbroken”), her experience as written in this article is amazingly similar to what I myself have experienced.  If you only have time to read one article this week, stop reading this one and read hers instead. (Then come back to this one later.) http://www.cfids-cab.org/MESA/Hillenbrand.html



Single mom, no bike.

For those that know me, I am a farm-raised kind of girl who determined her self-worth by how hard she could work, by how many hours she could labor and sweat without rest. I struggled to maintain that identity the whole time I was ill, unknowingly further harming myself. I just could not understand why I felt so exhausted, I was not a lazy person. I had fallen so far down into the “pit” that just walking a partial block was too much for me to bear. Then came a divorce and I was solely responsible to support and care for two young daughters. I did the best I could and was able to function to care for them, but that was about the limit of the quality of my life. 

Then I met Chris. Chris was an avid cyclist and an incredibly active man. I doubted my ability to keep up with someone like him while I struggled to walk a block. This and other obstacles did not deter him from pursuing me and I felt that if he was willing to weather the storms in my life than the least that I could do was meet him halfway. His love of cycling and his desire to share it with me helped me to overcome my apprehension and I started to ride with him.

The first ride pushed me to my limit and left me shaking, dizzy and disoriented. We had gone only 6 miles. I was ashamed and I felt that surely Chris would not have the patience to put up with a woman so weak. To my shock, he held on with me and his refusal to give up on me fueled my fire. Don’t get me wrong, riding with Chris is tough because he COULD… NOT… GO…. SLOW! He would always assure me that he would just ride ahead and ride back to meet up with me but I hated being left behind, it was too much of an analogy for how I had lived my life for so long with CFS. So I did what the stubborn farm girl in me always did when challenged, I hauled ass. Months later I had managed to barter for a nice little hybrid and I was pulling thirty and forty mile rides averaging 17 to 19 mph. I named the bike “Effie” because on her I felt “effortless”.  On straight-aways I could maintain 22 to 23 miles per hour and on downhills I was a brick that knew no fear of fast curves. In that way I was able to keep up with Chris aka “the Kite” and rebuild myself into something of an athlete.

For a while, I forgot I had this mystery illness. I worked teaching at a smaller local college, often commuting on Effie and for play I ate up the trails with a joy of freedom I had never before known. Then Effie was stolen and, for a while, I lost my heart.

Looking back, I can’t help but think that the electric shock I felt in my heart when I discovered my beloved bike was gone had jump started “Steve” back to life. A few months later I became ill with pneumonia and fell right back into the pit that I had thought I had forever escaped.  Illness, miscarriage, disability and bankruptcy awaited me in the pit and it seemed that every time that I could start to climb out again I was caught by the ankle and pulled back down into the sulfurous depths.



Newest (and last) Grove addition.

Pregnancy with our son was a blessing of good health as my CFS went into a short remission but the -100% natural- delivery depleted everything I had and I was once again in the hole. Now I was at home, chasing a very active baby boy (who seems to ignore the idea that babies need lots of sleep) at my not-so tender age of 38 with a full onslaught of CFS symptoms while my husband went to work every day to support our large, blended family. Honestly, it is hard to want to keep fighting when you are that exhausted.

Then my father-in-law, ironically also named “Steve”, posted a guest blog and introduced us to the www.livestrong.com site while talking about his own challenges to be healthy. Thinking of the considerable challenges he lives with, of how hard he fights to stand back up every time his health and heart faltered how dare I wallow in the “Pit of Steve” and not fight back too? Newly armed with a diagnosis –and with that a better idea of how to manage living with CFS- and a new account with the Livestrong.com website I began to track what I ate, what I drank and what I did each day. As Steve (the good one) urged in his blog article I was brutally honest with myself and I logged in every day for two weeks. I learned so much about not just what I ate, but how I ate. I was able to whittle away too-large portion sizes and limit the vices that packed in the calories. I went from an average of 2,000 calories per day to under 1,700 per day. I have lost three pounds in those 14 days.

The exercise is trickier; I have to be careful not to exhaust my small reserves. For two weeks now I have been slowly ramping up with yoga and then added Tai Chi. Now, I am ready for more. Today is day fifteen and will be my first gym ball workout but all of this is just working up the strength and breath to get back on a bike. We have not yet been able to afford to replace my beloved hybrid Effie so I am stuck with loaners but anything that gets me back on the trails is a worthy steed indeed.  

Before I wrap this up I wanted to thank Eric Taylor for sharing his story with us. His misfortune with his bike inspired not just a blog about his challenges but yet another blog about some of my own trials. This spring, Eric, I will see you on the trail! Stay strong.